Sam Berns, the Massachusetts high school student who lived with a rare genetic disorder that caused him to age rapidly, died Friday from complications with the disease. He was 17.
Berns, who became something of the poster child for the rare aging disorder, called progeria, inspired the formation of the Progeria Research Foundation, a nonprofit established by Berns’ family members to treat and better understand the disease. According to the Boston Globe, Berns’s parents, both doctors, even started a research campaign that flew children with progeria to Boston from all corners of the globe. In 2003 they were able to identify the gene that causes the disorder and develop a drug treatment that has aided in prolonging the lives of children with progeria.
According to reports, doctors told Berns’s parents he wouldn’t live past the age of 13. Berns died at home on Friday with his parents by his side.
“It’s with heavy hearts we announce Sam Berns has passed away,” the Progeria Research Foundation announced Saturday on its Facebook page. “His courage moved all who knew him.”
When studying fictional stories I sometimes wonder what it would be like for the characters to live in the actual world. Would they behave the same if their behavior was not decided by an author trying to prove a point? Apparently not, but that is obviously just conjecture. Sam's parent's were more supportive than Benjamin's, they looked for a way to help instead of hiding the problem away, and unfortunately, Sam did not live long enough to make many of the same decisions that Benjamin Button made.
When I read articles about Sam Berns I feel inspired to be more than I am. To face my difficulties head on and deal with any problem that might arise. When I read the accounts of Benjamin Button I find his story profound and entertaining, but hardly what anyone would call inspiring. The story of Sam Berns is one of a boy born with an illness who lived each day as best he could and tried to last for as long as he could with the support of everyone who knew and loved him. Fitzgerald's Benjamin Button is a boy who was born under strange circumstances, never dealt with the problem (because it is hard to argue that aging in the wrong direction is not - at least a little - problematic) Ruined the lives of those he was responsible to improve (this is more of a theoretical debate of whether or not it is your responsibility to improve the lives of the people who love you particularly your spouse, parents, and children) and ultimately unlearns every lesson he ever learned in his life. By the end of the story Benjamin becomes the poster child (child in that he actually does become a child finally) of why a person can not have youth and wisdom at the same time.
So what makes the difference between Sam Berns and Benjamin Button? It sure is a curious case after all... What really separate the fictional character from the boy who suffered from the disease his curious case is likely based on (though by all accounts Fitzgerald may not have actually been aware a disease like this existed). To me it seems that the difference is made by the point of the story. Fitzgerald used Mr. Button to make a point, the way all good authors use their characters. Benjamin teaches a reader about aging and relationships in regards to age as well as what anyone else can take from the story. In real life nobody needs to use children to make a point, the point is made by their actions alone. Sam's bravery and positive attitude makes enough of a point that no writer would ever need to manipulate the events.
What interests me beyond anything else is that the real life boy handled his unfortunate fate incredibly better than a fictional character by a long shot.
Thank you for bringing in the parallel that we all connected it to, and more importantly, making this very important contrast. It is interesting that everyone sees progeria as what Benjamin Button had, especially since there are huge differences between the two. In progeria, the child is born as a normal infant, and the aging process just speeds up, leaving him older than his true age. Benjamin Button was born old, and decreased in age (perhaps this can be described as aging so fast you are going backwards, but that seems odd). While progeria and Benjamin Button are both describing aging disorders, they seem opposite: one goes up too fast, one goes down.
ReplyDeleteReally interesting blog post ST! I really like how you brought this short story to real life through this example, and then how you compared the story to reality. Your statement of “When I read the accounts of Benjamin Button I find his story profound and entertaining, but hardly what anyone would call inspiring,” is a really thoughtful comment. I recently wrote an article in the Stern newspaper for the Science and Technology section about Sam Berns, as he recently passed away, and I thought it would be a nice tribute to bring awareness to the genetic disease that this inspirational individual suffered from. Perhaps it may be interesting for some of you to hear about the actual biology behind this disease:
ReplyDeleteThis disease, Progeria, is caused by a mutation in the LMNA gene which produced the lamin A protein which hold a cell’s nucleus together. The abnormal lamin A protein is termed progerin. Progerin causes the nucleus to become unstable. This instability is then responsible for the rapid and premature aging that is seen in those suffering with Progeria. Scientists believe that perhaps by studying this disease and the lamin A proteins they will be able to better understand the process of regular aging and the heart diseases that subsequently present themselves. Every human does produce a small amount of this progerin, yet those with Progeria disoder produce much more progerin than those without the disease. The progerin that builds up within the human body throughout one’s lifetime may be one of the causes of certain medical issues associated with aging, such as atherosclerosis (hardening of the arteries).
The mutation that causes this disease is one of chance and is extremely rare (as in it is not the normal genetic disease that runs through families).
As Shulie took note, Progeria is not exactly the same as what occurred in this short story about Benjamin Buttons, but I do still think that the comparisons can still be made. This is especially true with regards to what ST said about Sam Berns truly being an inspiration to us all. One such example is when he said upon being interviewed on TEDx MidAtlantic 2013, “I don’t waste energy feeling bad for myself. I surround myself with people I want to be with and I keep moving forward. With this philosophy I hope all of you can have a happy life as well.”
I did at first think that perhaps Fitzgerald had been exposed to someone who suffered from Progeria thus inspiring him to write this novel. Yet, I looked into this and I actually found that apparently Fitzgerald thought of this idea on accounts of a comment made my Mark Twain, that “it was a pity that the best part of life came at the beginning and the worst part at the end” (http://www.feedbooks.com/book/3431/the-curious-case-of-benjamin-button).
Just another noteworthy fact is that there has also been a movie made about the life of Sam Berns, entitled “Life According to Sam.” Perhaps it would be interesting to see how the two films compare and contrast (of course we would have to take into account the fact that the film the “Curious Case of Benjamin Buttons” is a Hollywood adaptation while Sam Berns’ film is the more realistic film version).
Another huge difference was the effect the two people— one real, one fictional— had on the people surrounding them. Sam Berns inspired millions with his Ted talk: “I don’t waste energy feeling bad for myself. I surround myself with people I want to be with and I keep moving forward. With this philosophy I hope all of you can have a happy life as well.” He brings a message of using time wisely, and achieving happiness despite limitations. By living his life to the fullest, he not only changed his life, but also the lives of others. Benjamin Button didn’t have that effect on people. He didn’t accomplish anything lasting, despite having “the best part of his life come at the beginning.” He made a reputation for himself, which quickly faded away, and was constantly trying to fulfill others’ expectations of him, instead of living the life he had.
ReplyDeleteWhile I respect Sam Berns, and see that he was a truly great individual, Benjamin Button inspired only pity in me.
Not only is the story of Benjamin Button far from inspiring, but I would argue that it is the exact antithesis of the story of Sam Berns. Whereas Sam Berns' story is one of bitter-sweet happiness, the sentences that compose Benjamin Button are interwoven with discomfort stemming from the painful portrayal of Roger Button's denial of the precious father-child relationship. Roger Button is consistently concerned with the potential that Benjamin might ruin Roger's reputation among society. It is all about Roger, and his own self-interest, while Roger never shows concern about the struggles that inflict his own son throughout his life that are by far more profound than a tarnished reputation. I thereby attribute a lot of the accurate yet unfortunate accusations of Benjamin that everyone points out above, not to Benjamin but to the consequences resulting from how Mr. Button handled his son's situation.
ReplyDeleteIn Sam Berns' Ted Talk in 2013 he explained his philosophy for a happy life. His three main points were: 1. “Be OK with what you ultimately can't do, because there is so much that you CAN do. Put things in the CAN do category by making adjustments." 2. "Surround yourself with people you want to be around. They provide the real positive influence [and] the real positive impact." 3. "Always try to have something to look forward to; something to strive toward to make life richer.”
In Benjamin Button, everything was about what he couldn’t do. Benjamin wanted to read encyclopedia’s but because nature dictated that he should be interested in train sets and toy soldiers, Mr. Button squandered his son’s aspirations and forced childish interests upon him instead. Benjamin throughly enjoyed himself when he was in the companionship of his grandfather. They undoubtedly expressed similar interests and had Mr. Button let Benjamin choose who he surrounded himself with, Benjamin could’ve had many more positive influences in his life and perhaps could’ve influenced many more of those around him too. Lastly, being stifled by his father his whole life, Benjamin was rarely able to strive towards his own personal goals. It is only when he reaches middle-age and he is making his own choices that there is an apparent turn in the life Benjamin lives. After he marries, he succeeds in business, serves in the military, and goes to dances. He learns about what he enjoys in life and takes advantage of the things that make his life richer, which in turn gives him the ability to live in the moment and have activities to look forward to, something that Sam really pushes for.
If anyone is interested, here is the short, twelve and a half minute clip from Ted Talks to get to know Sam a little bit more: http://tedxtalks.ted.com/video/My-philosophy-for-a-happy-life;search%3Atag%3A%22TEDxMidAtlantic%22. Thank you ST for posting this!
Thank your for your post and for sharing an inspirational person with us. It is a self-check when you hear about individuals afflicted with disorders and heroically managing to maintain a positive outlook. It is not so rare that it is unheard of, but not so common that it is the norm. Benjamin Button's behavior is more of what someone might expect but really every situation is different and every person is different so who are we to judge. In Benjamin Button's case he is fictional so it cannot be morally wrong to cast judgment. While he may not have acted heroically, he didn't do anything especially bad. He tried to live his life as normally as he could, given his situation.
ReplyDeleteHi Esti,
ReplyDeleteI really liked your post on Benjamin Button. I think it's fascinating that Fitzgerald's work has an actual precedent in science that makes his writing, along with its morals and lessons, applicable on a real-life scale.
I thought your post was incredibly inspiring, because it illustrated how different things are when they are mere subjects of fiction vs. when they are actually true. As you said, the character of Benjamin Button was used for a certain purpose, that of Fitzgerald's own portrayal of what may happen when a society is so youth-obsessed, disaster ensues. However, in the case of Sam Burns, he only brought inspiration and respect among the world-wide community. However, there is still some kernel of truth to Fitzgerald's story, for Sam Burns, and his research foundation, actually did endorse studies that explored the scientific basis of ageing. By using those who age at an incredibly fast rate, it was easier to study the cellular processes that were contributing to the same process everyone else experiences on a much slower scale. Thus, our society still remains enamored with youth, though not in the overt way Fitzgerald described. It is important to keep in mind that some of these works of literature, while founded in fantasy, have deep insights into the true, and sometimes insidious, world around us.
What an interesting commentary and tie-in to real life events. I would agree that Sam Berns and his family seem to have dealt with this disorder better than the fictional Benjamin Button, but what interests me is the different approaches by society to each. Sam Berns seems to have been loved and cared for, and his condition was viewed as a disease. Benjamin Button's parents seemed to want him to snap out of it; they don't appreciate the painful and isolating nature of his condition. I think that the original Benjamin Button might also have overlooked a point about the similarities between extreme age and youth. Both the extremely young and the extremely old are those who we feel we should care for in modern society, and there are moments that elderly people can appear as childish and spontaneous as the very young; and times you look into a baby's face and swear he knows more than he's letting on.
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